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wow, this sounds like my sx that have my drs baffled.... any good source of info about EE? what types of tests are conducted to dx it? anywhere in the GI tract? in regards to the Dr who misdiagnosed you. In order to have him "investigated" by the regulatory entity, you need to file a complain with the respective board of medicine....it's a simple process

Hi, I've been taking Florinef (generic version) for six months now. At the beginning I had a lot of headaches, but went away with use. Now, I get headaches once in a while, not too bad. I also make sure to drink plenty of fluids and lots of salt. Florinef doesn't worh without these. Without a doubt, this med has helped. I haven't gained weight, but I make sure I don't eat sweets and too many "bad carbs". I already get a lot of sugar from drinking Gatorade (I wished there was a version out there without the sugar!). Hope this helps

How can one get a hold of this research?

suposedly, full effect is after 7-14 days. I didn't start to feel different until 2-3 weeks after starting the med. At the beginning I got bad headaches but went away with use (can't remember how long though)

Hi Amanda (pretty name!) I'm on florinef and has made a big difference to me. I'm on 0.05 mg and in days I feel worse I can icnrease it to 0.1 or 0.15 mg. In regards to potassium and magnessium, yes it can cause some loss that can be treated with supplemets. Your dr needs to check your blood and avice you to how much you need to supplement. I have not gained weight. When people gain weight is due to water retention usually, as florinef is not cortisol is aldosterone, which is the hormone (also produced by your adrenals) that regulates water and salt balance. This is also why it's usually called the salt-steroid, and it makes your kidney to retain more salt in exchange for potassium and magnessium sometimes. In comparison to cortisol-steroids (such as prednisone) side effects are milder. I also experienced headaches at the beginning but went away after some time using it. But, for me, all of this is nothing compared to the good benefits I've experienced. i tried to stop it once for a test and couldn't tolerate it, my dr put me back on it without performing the test. You may want to talk to your dr and start gradually if it makes you feel better. Good luck! Andrea PS: BTW above explanation was given to me by my Dr who always takes the time to explain everything to me.

Hi there, Yes potassium needs to be monitored. In my case, my Dr checked after a few weeks taking florinef, to see if I was losing potassium and magnessium (potassium loss occurs in 50% of the cases and 5% magnessium loss). So after my Dr checked my blood, she was able to tell me how much to take. I try to get it from natural sources, such as bananas. Also, your Dr needs to continue monitoring your potassium and magnessium after that. Hope this helps

wow, it sounds scary.....I take florinef (generic version) and haven't experienced anything like that. It's a drug that should help you retain salt and due to this, it may cause loss of potassium and sometimes, magnessium. I wonder if you had these and maybe they caused the problems you experienced? anybody checked your potassium and magnessium level? Although I honestly don't know if they may cause the sx you described...I've felt good with florinef. Really hope you feel better soon.

Hi Lisa, The insurance company will do anything it can to deny your benefits -especially LTD, STD is easier.....UNUM is well known for this and got in trouble a couple of years ago, as it was denying claims it should've paid. However, I'd suggest you get a LTD lawyer to handle your claim if you get denied. They don't charge you upfront -they collect a fee from the money is owned to you and it's sometimes the only way you can get them to pay......sorry to hear that besides being sick, you have to deal with an insurance company that doesn't want to pay and that hires reps that mistreat you....they probably don't know how it's like to be very sick. Hope this helps, Andrea

I'm just wondering if people have noticed any difference between the brand and generic of these two meds. O tried Midrodine, but got me really sick, so my Dr told me to stop it. I've been getting the generic form of florinef, but today pharmacy gave me different looking tablet, when I inquired I was told that it's another manufacturer. I'm afriad of changing manufacturers but also would like to know if people here have noticed any differences. Thanks!

Hi there, Just a side note about Florinef. It doesn't work if you don't increase your salt intake (and fluids of course). My endo has told me that I need to make sure that I eat lots of salt and fluids for the florinef to work. I do feel the difference when I don't do so....also it may be that it's not working right for you and you need another medication (discuss this with your Dr)

Hi there, I'm fairly new here, so I've been reading rather than posting much....but I must say that I can't believe someone can post something so mean. I'm sorry you have to go thru this and having a person laugh at you. I hope you can find a solution to your housing situation soon.....

Thanks to all again for your replies..... Just a little update, my GP and my Endo talked today and they don't seem to agree on what to do next. My GP would like me to get on a low dosis of prednisone and slowly tamper me off. Apparently, my endo thinks that's better to use other drug (acetate something, I can't remember exactly) at higher dosis...soooo my GP today said to talk with my endo and to make a decision...I see my endo on Friday....they both seem to agree that my dysautonomia sx are caused by my adrenals though (we all hope)...but I really don't know what to do. I like both my GP and my endo. My GP is a new one, I found her after my previous GP said he didn't know what what's wrong with me and just wait to see if I got better (he, he's not in my body!) and my endo found out 5 years ago that I had an overactive thryoid when other Drs said that I was just "stressed" and to take a vacation...go figure. Any advice, rec, etc is more than welcome at this point. Thanks to all again, I'm very happy to have found this forum! Andrea

Thanks to all for your replies.... Lisa, I'm interested in knowing if when Addisson's was dx, did they do the anti-bodies test? I'm just looking for an answer to my sx, no one seems to know what's wrong. I was told by one of my Drs that although I have a dysautonomia, he was sure that I'd get better eventually.....just to wait and see. My other Drs are trying and don't know what's wrong....just frustrated, sorry for venting

Hi Lauren, thanks for your reply. Yes, I have a great endo! and yes I've had a CT scan of the abdomen done that came back normal.....like evrything else. It may sound weird but I was so excited of having an "abnormal" test that may indicate why I'm having these problems....

Thanks for the article....it sounded sooo familiar However, it says that the problem with the renin-aldosterone axis is due to malfunction of the ANS.....can it be the opposite? I just wonder

Hi, I've been reading some posting in regards of people with adrenal insuff. What I couldn't find if it was believed to be the cause of your dysautonomia? and if treatment cleared or improved your sx? Thanks! I'm interested as finally a test comes back with something: low cortisol level and my GP & endo think it may be causing my sx (they know about pots but are not expertes - they're trying though to help) and was wondering what others experiences on this topics are?

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Hi Melissa, sorry that you ended up in the ER. I really hope you're feeling better!!!

I had always experienced increased HR with drop of BP. However, yesterday I ws at my dr's office my BP would drop from 100 seated to 80 standing w/o significant increase on HR...when it usually increased at least 20 bpm. Has anyone experienced something like this?

Hi Dana, I'm also new to this forum...and I'm glad I found it!! I can really relate to what you describe. Dizziness!!!! I hate it!!! and like you, I seem to wake up sort-of ok in the morning adn a couple of hours into it, it feels like a truck hit me! I feel lightheaded or dizzy and can barely do anything. I have not been formarlly dx with POTS.....yet, but I relate so much to sx described here that can't really imagine what else it can be. My previous GP didn't know what to do w/me, my new GP listens and is at least trying to rule out what can be causing my dysautonomia. I was sent to a cardiologist who sent me right back to my GP!!! guess he didn't know what to do with me. Oh well, just wanted to say hi and thank everyone for such a great forum. Andrea

Hi all, Although I'm new here, I think I've found great people and a great place. I'm still not formally dx with POTS, just Orthostatic Hypotension and was wondering what other people's experiences have been. For instance, how were you dx with POTS? main sx? do you have sx 24x7 or only during "episodes"? what sx do you experience during these episodes? what helps? Sorry for all the questions, but I'm looking for answers. Thanks in advance to all!!!

Thanks to all for your replies! I have another question. I too take gatorade, but was wondering if there's anything else out there that will help balance elctrolytes but not contain so much sugar. Does anyone have experience with another drink? if so, how do you feel about it? Lauren, thanks for the info. How do you take your sodium? tablets or just eating tons of salty food? I may try the IV fluids to see how I feel. Thanks again!

Thanks to all for your replies and words of support. Today, I went to see a cardiologist for the first time.....he seemed puzzled, said it was most probably an adrenal problem and to get checked for Lyme disease...with this, he sent me back to my endo and GP. He did agree to an event monitor as my GP had requested. I guess I didn't know what to expect, so I guess I'm a bit dissapointed...I guess I was looking for the magic answer for my problems. In regards to proamitine, has anybody experienced the drop in HR like I did? I found on the internet that this may be a side-effect and it results in bradychardia to stop the med. Anyway, after my experience, my GP + Endo decided to take me off the proamitine and put me back on florinef....the test can wait they said, what's important is that I feel better and I am today. One thing my endo emphasized again is the need to eat a lot of salt while on florinef, w/o it doesn't work. Thanks to all again!

"Does it really help?" Hi, yep as the epi-pen will immediately stop the process and open your airwaves (you still need to go to the ER though - or what's recommended, use the epi-pen and call an ambulance). If it wasn't because I had an epi-pen handy at that time......I wouldn't be here today. It did save my life

Hi Lauren, I'm new here, so wanted to say hi. Also, it's curious that you mentioned the anaphylaxis as (if you read my story) this is how everythin started for me. I got bitten by a spider, I went into anaphylactic shock within minutes. I experienced severe dizziness, tachycardia, numbness, etc. When you have anaphylaxis, your body goes into shock and it's unable to regulate your BP as all blood vessels open at the same time. Your body is attacking itself, in this case your central nervous sytem. Based on my experience, I'd say that the difference is that your throat starts to close and thus you have difficulty breathing -not to be confused with shortness of breath due to tachy- you may experience voice hoarness as well. Nonetheless, I've been told by by allergist that when in doubt use the epi-pen (yes, now I carry not one but several, which I have a different locations plus always one with me). Another sx that you may experience during anaphylaxis is hives -but it's not always present- also usually -but not always- it's very sudden. I started with anaphylaxis three months ago. Today I still have OI and dizzy "episodes" with increased tachycardia and feeling that I'm going to faint. Although it's similar, it's different from the allergic reaction I experienced three months ago and that triggered my current problems. Hope this helps, I'm not a Dr or anything like it but this is my experience.